'I'm lucky I found a trial that was so right for me' 

Karen Ayres has an aggressive form of multiple sclerosis (MS). The severity of her symptoms varies, but at their worst she was paralysed from the neck down.

''I was in a dire situation,'' she says. Her doctor at the NHS Walton Centre for Neurology in Merseyside suggested she might be suitable for a clinical trial of a combination of treatments. One was a form of chemotherapy often used in cancer treatment, and the other was a medication already used for MS.

Karen Ayres

It was an untested and risky option. The chemotherapy part of the treatment posed a small but definite risk of leukaemia, and it was uncertain whether or not the combination would do any good.

''My doctor was very open and honest about the risks. He emphasised that there was no guarantee that the combination would work, and that if it did, it wasn't certain that any improvement would be sustained.''

Karen decided to take part in the trial. Her feeling that she was being told about the possible harms, as well as the benefits, helped her make her choice.

''I was running out of options,'' she says. ''Even so, you have to go into a clinical trial hoping it will work, but knowing that it might not. You can't go into a trial lightly – you need to know things and ask a lot of questions.''

She says she is fortunate to have been able to enter the trial. She was only the twelfth person to have the treatment. She also feels pleased to have been able, ''in a very small way'', to help find an effective treatment for some MS patients. ''I did my bit for science, and I hope the research will help other MS researchers.'' 

Page last reviewed: 15/06/2016

Next review due: 15/06/2019